New Pacemaker Location

I have had a pacemaker since I was 8 (20+ years). It was in my abdomin until recently when it was moved to under my chest muscle and the leads changed to intra-venious. Trying to figure out the limitations I am going to have to live with now. I never let the pacemaker adjust my lifestyle, I played college sports and my leads seemed to do fine. I am very active and enjoy workout out, which I know is going to take a hit. They put the pacemaker under the chest muscle and you can't notice it at all, that may change since I am unable to do heavy chest workouts anymore. Just wanted to introduce myself. Any younger patients who have pacemakers in the abdonin area, I am happy to answer any questions! 

 

Is there somewhere on teh forum to look into getting these in-vein leads changed one day? Since I am only 30, I am paranoid that when this operations comes I will still be very young, I have heard it is difficult at any age. 


12 Comments

Sub pectoral PM placement

by ar_vin - 2019-09-03 14:38:43

First, welcome to the PM club! You've obviously been living with a PM a lot longer than many of the longer standing members on here (including me).

The sub pectoral placement shouldn't limit any of your activities once the surgical wound heals and the new leads embed themselves in the cardiac tissue - this could be up to 8-12 weeks likely sooner.

I've had a sub pectoral PM since September 2018 and I returned to most of my strenuous outdoor pursuits about two months after the implant. I now regularly lift weights, hike, run, and climb in the hills around where I live. Later this month I plan to do a climbing/backpacking trip at altitude (11000 ft - 14000 ft) in the Sierra. 

Best for you to check with your EP about temporary restrictions until you fully heal.

I have nothing to offer to your questions/concerns about in-vein leads as I have no experience with lead extraction etc. Other club members will chime in soon!

 

Thanks!

by LifeTimePacer - 2019-09-03 16:05:04

I appreciate the insight! When you exercise, do you do weighted chest exercises? The Dr. said his initial concern was each repetition is another movement of the lead, and you only get so many of those over the life-span of the leads. But I agree, my last leads lasted 13 years and I was very active (the abdomeninal leads do not last as long as the in-vein ones). 

leads

by Tracey_E - 2019-09-03 16:29:20

Verify with your doctor, but you should be able to do what you want once you heal. They don't recommend full contact sports, but we have members who do. When it's buried, it's well protected. A few doctors limit weights overhead or things like pull ups but most do not. I've been doing Crossfit for 8 years (heavy weights overhead, pull ups, push ups, etc), kayak, hike with a heavy pack, ski- whatever I want. My leads are fine so far and my ep encourages me to be as active as I can.

If a lead goes bad, there is usually room in the vein for at least one or two more so the choices are cap off the bad one and add a new one, extract what is there and start over, or move to the other side. I got my first pacer at age 27. 15 years later  one of the leads needed replaced, we added to what is there. I'm 52 now, still using one of my original leads plus the newer one, and the one that is capped off. I don't have more room in the vein so if one of these goes bad, extraction will be on the table. But so far, so good! I'm hoping to put it off long enough that my next set of leads is my last.

Leads get thinner and tougher all the time. The number of surgeons who can do extraction gets larger, the technology they use gets better.  It's something to be aware of but I don't think it's anything to fear. It used to be high risk but it's come a long long way in even the last few years. By the time you need it, it'll probably be totally different than it is now. 

advice I've gotten

by Tracey_E - 2019-09-03 17:22:33

My rep, who has been my rep since my first pacer in 1994 and has seen many many patients over a lot of years, said nothing I do is going to damage either the box or the leads. 

My ep, who specializes in adult congenital so sees a lot of patients paced for a lifetime, said he rarely sees leads go bad other than from age, and he'd be more worried about the risks of being out of shape. He feels risk to the leads is negligible. 

Leads are not in tight and they are intended to move with us, and when it's subpectoral it's well insulated.  I'm not sure what they mean by weighted chest exercises. Unless you're training for the Olympics or a professional sport, I would imagine you won't be doing anything too crazy, either going heavy or too many reps.  I do barbells, kettlebells, dumbbells so all free weights, not machines. I pick them up, sometimes hold them in front and squat, sometimes go overhead with them. I do triple digits overhead. I deadlift more than my body weight. I did 50 push ups this morning, to me that feels like it uses more chest muscles than lifting weights. I can tell when I do something that aggravates the scar tissue, usually it's a whole lot of push ups (way more than today's 50) or ring rows. When it was newer, swinging the kettlebell and push ups made me sore but not anymore. Listen to your body as you get back to it. You'll be able to tell when something doesn't feel right. We will get sore long before the device will get damaged. 

Thanks and that is what I was hoping for

by LifeTimePacer - 2019-09-03 19:09:58

Thanks, Tracey! That is very helpful. I think my doctor was saying the risk is primarily with the wires and heavy lifting. When they went in, they said the pectoral muscle was almost (estimated) 3 inches thick, which made it very difficult to get underneath and bury. I have not had my follow up yet to see what his primary concerns were, but I am definitely going to ask. I am definitely not doing strength competitions by any means! But when I would go to the gym, I would be benching 275lbs on my last set (not anything crazy since I weigh 195lbs). The concern may be if the bar falls? I will definitely be digging deep into this issue with him. So great to hear people are so active on here. This site (and the exercise portion) has provided a ton of knowledge for when I meet with my doctor. 

if the bar falls

by Tracey_E - 2019-09-04 10:46:08

If the bar falls, it's gonna hurt! The boxes are titanium, we aren't quite so tough. I guess it's possible to crush a lead if the bar fell just right, but they move with us and are under muscle. 

I was pretty careful about holding the bar in front rack for the first 6 months or so after my last replacement, stuck to weights I knew I wouldn't lose control of or have to drop quickly. Then all the residual soreness went away, my confidence came back, and I went back to not really thinking about it. 

There aren't enough of us active enough and paced long enough for there to really be any sort of research or standards in what limitiations they give us. Every doctor seems to be a little different, some are considerably more cautious than others. One thing I've notice tho, is the ones who seem to be the most conservative are the ones who have the fewest young, active patients, most likely because they don't know any better. The ones with a lot of active patients tend to say go for it. The truth is they just don't know for sure. We've had a few members report they damaged leads from activity. My doctor says he rarely sees it. Talk to your doctor, then do what you are comfortable with.

leads older than you

by dwelch - 2019-09-07 00:00:07

As with others here, I have leads older than you.  I recently graduated from a dual lead to a bi-ventrical (three lead).  I was 19 with my first device, so not as young as you when you started.  Had a lead break on the first replacement, at the time doc said you cant take them out without open heart surgery, going to just leave it in.  As Tracey_E pointed out it is becoming a lot more common.  So I have two leads over 30 years old of which one I am using I have a lead over 20 years old I am still using and a lead that is only a few years old.  Fifth device, number four was taken out early to switch to the three lead, it didnt live its full battery life.

Because I have four leads in one side there was the concern about if they would fit and what to do if not.  The topic if removing leads came up, or tunneling over to the other side.  Even at my age, just over 50, they are still talking about saving the other side for the future, you have a pacemakers life over me on my journey (8 years old vs 19, maybe a pacer life plus a bit), so we are not too far removed.

Mine is not subpectoral, thats under the muscle right?  Mine is right out there where you can or at least could see it as you know those old ones were pretty big.  Did they let you keep those back then?  I am no longer able to keep them, lawyers...

It was the 80s I was doing BMX and skateboarding, mostly vert (read: countless times a day falling from 10-20 feet), the pacemaker didnt slow me down, one bit.  I have taken a couple of good hits on it, no problem.  Going to hurt you more than the device, whatever hits you and the case of the device, rock and a hard place basically.  In my case I would be more worried about the skin tearing open and having to deal with infection, or having to remove it, wait and put it in on the other side or whatever they have to do. Yours is more protected it sounds.   

Later or now, you are certainly of age, you have or might have kids, that like to climb on you and have little pointy elbows and knees and feet that always manage to hit the pacer.  No problems with that either.  Now she is full grown and her head is at pacer height so if she hugs me on that side sometimes I get a hard head to pacer hit...No problems.

Even at my age I am the or one of the youngest patients with a pacer at the doctors office, you have and will live most of your life with that.  So we are a bit special in that way, it will continue to be that way for most of your life.  

Am told the surgeon at the practice I go to is the guy you want for lead extraction, in the area (maybe every practice says that about their surgeon).  I guess will see if he is still working when I get that far along.  You have probably already reitred a doc at this point, I know I have.  And will retire another one no doubt.  Had never thought of going to the other side.  They talked about tunneling a lead over if I didnt have room meaning run it down the right side, then across the chest under the skin to the pacer on the left, in the fiture they can coil it up on the right and use it with a pacer on the right.  Fortunately I had room, and all four leads are on the one side.  No reason at this time to remove the broken lead.

Yes mechanically if you are a serious weight lifter then just the surgery alone may create an imbalance between the sides.  i am not familiar with what they have to cut to get in there, so that may affect your weight lifting.  The device being there may or may not cause you discomfort.  But I dont see how you could hurt the device, the leads are secured very well ito the device and dont see how you could cause them harm.  As with the last 20 years, once you heal from the surgery, be active, do your thing.  Nothing to worry about.

The folks that have posted about lead removal say its not a problem.  Think about this another way.  Do you have a choice?  No?  Then dont worry about it and move on.  Cant change it or fix it, so just live with it...

 

Happy to have you here, there was a teen here that showed up not too long ago.  And a parent or two,  keep an eye out there are no doubt going to be other parents that wander in from time to time and you can help them from the other side to reassure them that their kids will be able to live a normal life.  Why does everyone think a pacer is a curse, it is a solution.  I think the recent teen that was here was being teased at school, perhaps you have some advice there if you find that post.  And like Tracey_E and I you are not alone here with having a handful of devices thus far.  Someone posted recently and had I think another 10 years on us like 40 years of pacing instead of 30..Started in the 70s instead of the 80s like myself and a some others.

Welcome to the club.

 

I've had leads removed/replaced

by FirstDuely - 2019-09-08 20:24:24

I think I've had 9 pacers since I was 35.  I'm almost 70 and still riding road bike 100-150 miles per week (well, not when it's really hot).

I've also had two leads crack and both were extracted by Dr. Raymond Schaerf at Provident St. Joseph's Hospital in Burbank, CA. He is one of the best and now also travels to teach the method of extraction to others.  This past July I had a cracked lead so they replaced both with MRI safe leads which have several layers rather than the older style single layer of insulation.  The leads are thicker but they should prove to last a lot longer.  

The first lead replacement with pacer change took over 6 hours but was successful and my recover didn't take long and really was not much different than previous pacer replacements.  The most recent lead replacement, with both replaced, took about 1.5 hours total.  What a change in method and technology!!!  They actually map out the best location in the heart muscle for the lead implant now so you can get the best response.  They are good!  

By the time you "might" need new leads, so many more doctors will have learned how to do this procedure all over the country.  I've been sooo lucky to have Dr. "Ray" keeping me alive but the real saint is my pacer clinic friend, Dr. Dale Isaeff, at the Loma Linda Heart Clinic in southern California.  He's been checking on me for 34 years.  But my first pacer, the first dual chamber pacer made by Siemans Corp. in Sylmar, CA, was the first dual implanted in anyone in the world!!!  I would not be sitting here (after a 60 mile bike ride with buddies) next to my wonderful wife of 48 years without pacer technology evolving EXACTLY when I needed it.

Dr. Dale often states he just wants to improve the quality of my life.  He has.

Gary Norgan

Hemet, CA

Great to hear the stories!

by LifeTimePacer - 2019-09-09 17:43:49

Thanks for the stories! Glad to hear people have had these pacemakers longer than me, though I got mine at 8 years old, I doubt many got one younger than me! I actually had my ASD correction (when I was 5) at Loma Linda, great hospital. I am recovering nicely, but man, my chest is SO SORE still from them having to go through the muscle. But its been a week and a half and I am feeling better. You can't see the pacemaker at all, which is nice, but I am sure will make the next battery/device change less fun. 

Glad to be on this site and see how active people are. I am sure I will be back in the gym in no time, annoying my cardiologist (and wife). 

replacements when it's buried

by Tracey_E - 2019-09-11 09:26:32

We get a little more sore than when it's just under the skin, but I left for vacation within a week of having mine replaced. I stayed out of the ocean, thats about it, otherwise I felt fine and did what I wanted to to. I they go in the same place it's all  numb scar tissue. 

2 weeks out

by LifeTimePacer - 2019-09-11 11:08:39

I am still having some pretty serious pain in the edge of my chest and almost feels like it is radiating into my bicep. 

yep

by Tracey_E - 2019-09-11 21:24:50

That sounds about right for the first one. I was talking about when they replace it, it's not bad at all. The pain you're having now is a one time thing. First one, it took a good month to be mostly normal, closer to 3 months before all the residual pain was gone. Not saying it hurt all the time for that long, but it was easier to aggravate and I'd get occasional twinges if I moved the wrong way. Are you icing? I found that helped a lot, also helped when I got back to working out and started using those muscles for the first time. 

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